O-01 Identify unanswered questions for palliative and end of life care research – a James Lind alliance priority setting partnership refresh project

Abstract

Background

In 2015, Marie Curie and partners reported the results of the Palliative and end of life care Priority Setting Partnership (PeolcPSP) with the James Lind Alliance (JLA) that identified the top 10 unanswered research questions in palliative and end of life care. Prioritised questions were mapped onto funded research (Fordham, Candy, McMillan, et al. Health Open Res. 2020; 2(17): 17) and have been influential in the field of palliative and end of life care research, informing strategic funding opportunities for palliative and end of life care research in the UK, and also providing insights into public opinions of palliative and end of life care (Nelson. Health Open Res. 2020; 2(15):15).

Aims

To undertake a refresh of the Palliative and end of life care Priority Setting Partnership to identify current priorities for palliative and end of life care research, in partnership with the JLA and other organisations.

Methods

Sequential surveys open to members of the public and health and social care professionals to elicit potential research questions. A range of approaches will be used to try and reach a diverse sample. Identified questions will be checked against existing research and prioritised. The final priorities will be identified through a workshop attended by people affected by dying, death and bereavement and health and social care professionals. A group of people with lived experience has been set up to inform the project across all stages.

Results

Interim findings from the first survey will be shared, including emerging topics and characteristics of the sample recruited to date.

Conclusions

This work will explore, from the perspectives of people affected by dying and bereavement and health and social care professionals, what the current priorities for palliative and end of life care should be. This will provide vital insights to inform the direction of future research and ensure that research is shaped by the voices of those it is intended to benefit.